The right to establish identity: donor offspring — David Gollancz
17 December 2020
This is the second of two posts by David Gollancz, a barrister at Keating Chambers and donor-conceived adult, about the UK system of birth registration and certification. The first post concerned the treatment of transgender parents. This second post deals with the position of the offspring of gamete donation.
In two recent claims by trans parents, JK and TT/McConnell, the court determined that the law requiring trans people to be registered as parents in their native gender interfered with their Article 8 ECHR rights to respect for their private and family life, but that the interference was justified under Article 8(2). A significant, possibly decisive, reason for the court’s decision was the right of the children concerned to identify their biological ascendants. – described by the judge in JK  as “an important element of his or her fundamental identity”.
This is nothing new. The ECtHR has repeatedly emphasised that Article 8 includes the right to establish identity and, accordingly, the right to know the identity of one’s biological ascendants (Mikulić , Jäggi [37 – 38], Godelli ). The domestic court, in Rose  held (on the preliminary issue of whether Article 8 ECHR was engaged) that
Respect for private and family life requires that everyone should be able to establish details of their identity as individual human beings. This includes their origins and the opportunity to understand them.
But where a person is conceived in a UK licensed fertility clinic (a “clinic”) — like Mr McConnell’s son — their birth registration does not record, and their birth certificate does not disclose, the fact that they are donor-conceived, let alone the identity of their donor parent. Their donor’s identity is recorded by the Human Fertilisation and Embryology Authority (“HFEA”) (s31 Human Fertilisation and Embryology Act 1990). Since 1 April 2005, under the Human Fertilisation and Embryology Authority (Disclosure of Donor Information) Regulations 2004 (the “disclosure regulations”), a person aged 18 or over can require the HFEA to disclose whether they are donor-conceived and the identity of their donor (if the donor provided the relevant information after 31 March 2005). But that right is unlikely to be exercised unless someone tells them the truth, or it is obvious because their legal parents are of the same sex.
Thus a person’s “right” to identify their donor is in practice usually dependent on their legal parents (or some other third party) choosing to tell them that they are donor-conceived. Most legal parents do not: a meta-analysis of 2016 concluded that the probability of legal parents in the UK disclosing to their children that they are donor-conceived was less than 50%. Often they are first alerted by an unplanned disclosure in the context of a family crisis, or as the result of a DNA analysis carried out by a direct-to-consumer service, frequently to the shock and dismay of the subject. Even if they are told, and obtain the information from the HFEA, it does not form part of their official documentation.
By contrast, adopted people and those born by surrogacy can ascertain, from their official documentation and without the intervention of any third party, that they are adopted or surrogate-born. When they are 18 they can find out who their birth parents were. Only the donor-conceived are issued with official documentation which is positively misleading.
The Gender Recognition Act 2004 introduces a further potentially confounding element. When a Gender Recognition Certificate (“GRC”) is issued the Registrar General (“RG”) issues a new birth certificate reflecting the person’s recognised gender, and any new name, and a new entry is made in the register of births for the relevant date, as though the person had been assigned their recognised gender at birth. The original birth certificate is marked so as to maintain a link with the new records but this marking is unavailable to anyone other than in very limited circumstances. Consequently, the legal right of any descendant (whether genetic or by adoption) of the trans person to identify their parent, will in practice be frustrated where their parent has obtained a GRC.
Article 8 ECHR
The Article 8 right to establish personal identity is fundamental; it does not need to be justified by evidence of harms arising from its denial. But in the case of the donor-conceived, ignorance of genetic origins does create practical risks.
Being unaware of their genetic history, donor offspring and their descendants are unaware of risks to their health which would be apparent from their donor’s medical history. They are thus denied the opportunity to get timely medical advice, in breach of the right to physical and psychological integrity under Art. 8 ECHR and their rights to protection of life and access to medical treatment under Art 2 ECHR (Anderson v Spencer ) and protected by UNCRC Art 24, the International Covenant on Economic, Social and Cultural Rights Art. 12, and the WHO Declaration Art. 5.1.
A person who does not know the identity of a genetic progenitor is at risk of inadvertently engaging in sexual relations with a genetic half-sibling, niece, nephew or first cousin. This is not as remote a risk as might at first appear: clinics generally serve a limited area and each donor is allowed to contribute to the creation of ten families (not children, families), so the likelihood of a significant number of people of similar age in a given area being half-siblings is not negligible.
For most people it would be shocking and possibly psychologically damaging to discover that they had unknowingly engaged in sexual relations with a genetic close relative. Any offspring of such unions face an elevated risk of congenital disability, through the inheritance of recessive genes. Half-siblings share on average 25% of their DNA – twice that of the offspring of first cousin unions, where the risk in the population at large is 3%. While there are no studies of the incidence of congenital anomalies in the offspring of half-siblings, the risk may be comparable to that in first-cousin unions in smaller and more closed populations: about 6%. It is notable that this risk was recognised in the first legislation about donor conception, the Human Fertilisation and Embryology Act 1990, which permitted a person contemplating marriage (or, following amendment in 20008, an intimate physical relationship) to check with the HFEA whether their intended partner might be the offspring of the same donor (but not to find out who the donor was). Of course it is, again, highly unlikely that anyone who has not been told that they are donor-conceived will think to check.
Article 14 ECHR
The birth registration rules also, in breach of Article 14 ECHR, discriminate against donor offspring in their exercise of their ECHR rights:
- Unlike adopted people and those born by surrogacy, donor offspring do not have an autonomous right to ascertain the truth about their origins. A right which depends for its exercise on the discretion of a third party is no right at all — especially where the right-holder has no means of knowing that the discretion applies or has been exercised.
- Donor offspring whose legal parents are of the same sex will inevitably realise that they were conceived by assisted reproduction but those whose legal parents are of opposite sexes rely on disclosure.
- Whereas the legislation permitting adopted people to gain access to their original birth certificates is retrospective, the disclosure regulations only permit donor offspring to discover the name of their donor where the donor provided the relevant information after the enactment of the disclosure regulations.
The issues identified here and in connection with trans parents are easy to resolve; reform would also be an opportunity to clarify in legislation when short form and long-form official documentation is required, something which is currently unregulated.
The long-form birth certificate should be replaced by a Record of Personal Origin (“RPO”), recording in non-gendered language the identity of everyone involved in a person’s conception, birth and legal family: genetic parents (including any donor of mitochondrial DNA); any surrogate; and legal parents. Where the subject is adopted or issued with a GRC, the RPO would be updated. The RPO would be confidential to the subject and their descendants. Legislation would provide that the RPO could only be required by a third party in specified circumstances, for example the issue of a passport; for all other purposes the short form certificate would suffice. The short-form certificate would, as now, disclose only the name, date and place of birth of the individual, without details of their legal or genetic parentage.
The use of non-gendered language and the reform of birth certification to create a complete and accurate record of a person’s genetic and familial origins would respect and protect the rights of all concerned. It does not threaten the family relationships of those who turn to assisted reproduction: the fathers and mothers who care for children will still be fathers and mothers, but individuals’ personal stories and identities will no longer be erased and distorted by legal artificialities.
The author gratefully acknowledges the contributions to the factual and legal background and comments on the text of Prof. Neil Small (University of Bradford); Natalie Gamble (Natalie Gamble Associates); Julia Feast OBE; Dr Marilyn Crawshaw (University of York); Charlotte Goldberg (barrister).
There is too much material on this topic, both journalistic and scholarly, to list comprehensively here. The following are suggested:
- Gollancz D. Memorandum to the Joint Committee on the Human Tissue and Embryos (Draft) Bill Human Tissue and Embryos (Draft) Bill Volume II: Evidence Ev 44 366-368, 2007a.
- Crawshaw, Blyth, Feast Can the UK’s birth registration system better serve the interests of those born following collaborative assisted reproduction? Reproductive BioMedicine and Society Online (2017) 4, 1-4
For a contrary view:
- Fortin, Jane (2011) Children’s Right to Know Their Origins – Too Far, Too Fast? Child & Family Law Quarterly
 Tallandini et al Parental disclosure of assisted reproductive technology (ART) conception to their children: a systematic and meta-analytic review Hum Reprod. 2016; 31, 1275–1287
 The UK acceded to the Covenant in 1976. The Covenant is not incorporated to English law but is recognised as one of the international obligations which inform the interpretation of the guarantees contained in the ECHR (per Lady Hale PSC, In the matter of an application by Siobhan McLaughlin for Judicial Review (Northern Ireland)  UKSC 48 
 The WHO Declaration is not incorporated to English law but is recognised by the ECtHR, see Lopes de Sousa Fernandes v Portugal 56080/13 
 Sheridan et al, Risk factors for congenital anomaly in a multiethnic birth cohort: an analysis of the Born in Bradford study, Lancet 2013; 382: 1350–59 and author’s correspondence with Prof. Neil Small
An excellent, thought-provoking article. The right of the person being brought into the world without having any choice about it should always trump the rights of the parents and donors. Another issue which I believe should be addressed is the choice to have a ‘saviour’ child, one brought into the world for the purpose of ‘saving’ a pre-existing sibling; or subjecting an infant child to serious operation and anaesthesia to provide tissues or bone – marrow for another sibling.
It is a minefield of legal and ethical issues needing to be addressed; preferably with the rights of the child trumping those of the parents and the donor. The latter make choices, and those affected by them should have the right to know why those choices were made.
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